Two year old Gavin, was born with Leber’s Congenital Amaurosis (LCA). There is no cure, but we are helping to try to change that. This blog was started within 48 hours of receiving his diagnosis, at 4 months of age. It documents the triumphs, struggles and joys of raising a child, who happens to be blind.

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Friday, March 4, 2011

Why does Gavin wear glasses if he is blind?

This is from a NOTE that I posted on Gavin’s Groupies FB page. I have had numerous questions about this, so thought I would try to explain in detail. I’m still learning about the eye pressing, from dr’s, other parents, and therapists. So, this is just from information I have gathered, obviously I am not an expert in this – it’s my observations and learning experiences from raising Gavin!

I get this question a lot, and I know many more would like to ask, but maybe think they are out of place by doing so. I want to first state, that we are an open book! We are putting Gavin's story out there for others to learn about Leber's Congenital Amaurosis, and blindness.

If you have a question about Gavin, our Foundation, LCA, or anything related - PLEASE ASK! Email me, ask on Facebook, or ask me in person. Those of you who know me, know that I am always willing to load you up on information!

Many individuals with LCA (and other retina degenerative diseases) wear glasses. Some, do not. Many individuals who have LCA, are not all completely blind. Some are. I can't speak for everyone, but in Gavin's case, he is totally blind. In my heart when he was months old, I thought he had some peripheral vision. That has since deteriorated, or he never did have it. It's hard to tell with babies & children as they don't have a point of reference of what vision is and what they are supposed to be seeing. The dr's can give you an idea of what they think, based on what the eye tells them. The rest is what the parent thinks.

It was a hard day when I finally let it hit me, his peripheral was gone, and possibly his light perception was little to non-existent. Some days I think he has minimal light perception, other days I thnk he has none. But I did give up on trying to figure it out, because it can drive you crazy (and it was).

LCA is a degenerative disease, and there is no time table to tell you how degenerative it is in each case. It is so different from one individual to another. A lot that is determined upon which gene mutation you have. In Gavin's case, we are still fighting to have his identified. As of now Gavin's gene mutation is in the "unknown category".

Ok, back to Gavin's glasses.

Gavin's glasses are NOT prescription

They are transition lenses (he can have photophobia)

The main reason he wears them is to stop the eye pressing/poking/rubbing

Many individuals with LCA press their eyes. It is thought the more severe the vision impairment, the more of an eye presser you are. Gavin has been pressing his eyes since he was a few months old. We were told early on by his dr., to try to get him to NOT press/rub his eyes. We learned the hard way, and honestly this was a full time job for many, many long months! He goes through phases where the eye pressing/rubbing and poking is better than others.

When Gavin is getting good vestibular input, his eye pressing is less. But nonetheless, the phases still occur. He was in a very difficult phase a few months ago. He ripped his glasses off every chance he could - hundreds of times a day. Hundreds of times a day is not an exaggeration. He would poke his eyes to the point where half of his little finger was in his eye socket. We were left with the effects the next morning, with dark black eyes and sunken in eye sockets.

He is in a good phase right now, and only rips them off a few times a day. This has left his eyes looking less sunken, and no black eyes! Yay for good eye-pressing phases.

He presses/pokes his eyes, and it looks painful if you have seen it. It is thought to actually feel good, and is giving his retina the stimulation it needs, since it's not getting it from vision. It is feeding the part of the brain the stimulation it is desperately seeking, since the vision is non-existent. There are many opinions on this, as some others say they "see white lights" when they press their eyes. I will not know what Gavin's case is, until he is old enough to fully communicate with us. Even then, he has no point of reference.

So, he will probably always wear glasses! They are to protect his eyes. We don't want the cornea to become damaged from eye pressing. The need to eye press will probably always be present in his life, but as he gets older, he will begin to understand that it can do harm. Today, he doesn't understand that.

Gavin with his first pair of glasses, the first day he got them. – 6 mos old.

Do you have specs of the type of glasses he uses? Im asking for grandaughter, she has to have her one eye patched and they think she will need glasses for at least a year. Hers do not need to be prescription either. Can I e-mail you?